Executive Director

The Company is seeking an Executive Director to lead its mission of supporting young adults with chronic and rare conditions. The successful candidate will be responsible for overseeing all aspects of the organization, including direct support programming, and driving systems-level change in healthcare and research. This role involves partnering with the Board of Directors to define and implement organizational strategy, maintaining financial oversight, and leading fundraising efforts. The Executive Director will also serve as the primary external spokesperson, advocate, and will be expected to build and maintain relationships with funders, government officials, and community groups to advance key policy initiatives. The ideal Executive Director for the company will have a deep commitment to its mission, experience in team leadership and development, and a proven track record in fundraising. Strong skills in policy analysis, particularly in the areas of health policy and patient advocacy, are highly valued. The role requires a candidate who is action-oriented, resourceful, and has the ability to balance the needs of multiple stakeholders. Excellent communication, problem-solving, and interpersonal skills are essential, as is the ability to work both independently and collaboratively in a remote, dynamic environment. Experience with board member recruitment and engagement, as well as a background in working with young adults, is also a plus.